What I Want Others to Know This Month as Someone on the Autism Spectrum

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Recently I was asked to speak at New Jersey City University, the college I was accepted at for doctoral school, to share my story of living on the autism spectrum. This is what I had to say:

“Good evening, everyone. April is Autism Awareness Month and I was asked to share a few words about it.

A person who has autism is different and not less. No two people with autism are alike. Some people may have very few differences while others may have more. People with autism have unique abilities. They can process information at such a fast rate at times and are some of the most intelligent people you’ll ever meet.

You may not know this about me, but I couldn’t talk until I was 2 and a half. I have autism. I am just like anyone else. I have a job. I have a girlfriend. I love basketball, movies, “The Fresh Prince of Bel-Air” reruns and being around people like my friends and family. When people touch me at times it can scare me. Loud noises affect me as well. I twirl my hair and my hands sometimes when I have too much information to process in my head. I also have a hard time understanding sarcasm and other people’s perspectives.

While each person with autism has their own challenges, I can say that people with autism just want to be accepted. Autism is a part of who we are. Love us for that and everything else that makes us special in this world, because what often makes us different makes us oh-so beautiful, too. Thank you.”

After this talk I introduced a free screening of the autism-related film “Jack of The Red Hearts” that was sponsored by the Golden Door Film Festival and New Jersey City University.

Follow this journey on KerryMagro.com and on Facebook.

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To the Fraternity That Became a Part of My 'Village' as a Person With Autism

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Dear Alpha Xi Delta,

One message I share a lot about is the importance of having a “village.” In our autism community it is often the parents, family, teachers and therapists of a person with autism who become part of that village. Just like no individual with autism is the same, you can say the exact same thing about every person’s village. Today, I want to share with you though that you will always have a place as part of my village for what’ve you done.

It was in 2009 that I first learned about your work to help raise awareness and funds for those with autism like me. I would see photos of your members at Walk Now For Autism Speaks events on Facebook, doing volunteer work at different autism schools, participating in Coaches Powering Forward for Autism events to spread autism awareness in college basketball, and then if that wasn’t enough, spreading awareness for those with autism on national television for World Autism Awareness Day.

Your work didn’t stop there. Just last year you showed me an act of kindness when you shared with me that you were making me a “FOX.” At first I didn’t know what FOX meant, until one day I decided to look it up. “Friend of Xi” it read on your website. It made me a fan of your fraternity even more.

While reading more about your fraternity over the years, seeing that you’ve grown to over 150,000 members, become a national sponsor for our Walk program, and then have raised over $4 million to support our cause, it has made me realize the lasting impact you’ll continue to have for years to come.

But you’ve become so much more than just a village to people like me who are on the spectrum. You’ve become a part of my autism community family. Each one of your members has shown me kindness and respect. Something I think we can all show a lot more of for anyone in this world.

If you ever read this, I just want to say thank you. In college, I joined a national service fraternity to help others. While I was a brother in that fraternity, I learned so much about the importance of giving back like you have for so many. I can’t thank you enough for your impact.

girls showing support for Alpha Xi Delta

To learn more about Alpha Xi Delta, click here.

A version of this post originally appeared on Kerrymagro.com. Follow this journey on Facebook.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Letter From Someone With Autism Who Was Told She'd Never Talk

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Not many people understand me or really take the time to. They don’t understand meltdowns or sensitivities. It can become difficult to deal with.

When I was 2 and half, I was diagnosed with autism after I’d stopped talking and socializing. The doctors initially figured it out because I had a meltdown over being in the boys’ “Cars” room instead of the “Strawberry Shortcake” room. It was followed by about two years of not talking, many meltdowns, and sensitivities that even I didn’t understand. Doctors said I’d never talk again, I’d never be able to participate in normal school, and I would never socialize.

I was picky about my things. My stuffed animals had to be organized a certain way. I had to have matching clothes made out of material I was comfortable wearing. My toys had be organized by size and color. My bed had to be made perfectly. My food couldn’t touch. Only certain people could hug me or help me through a meltdown. I screamed when someone didn’t understand what I was telling them — because not being able to physically tell them made me upset.

I was often picked on for my organization, and I didn’t always understand things right away. A lot of people did it out of fun. But they couldn’t really understand how much it hurt me.

I had many people, namely my mom, help me so I could speak again and learn to cope with meltdowns. I started talking again when I was about 4. I still had to get speech therapy, but it really helped.

isabella with her family

Often times I was misunderstood. Nobody knew why I broke down in class, or got frustrated and didn’t want to do my work, or got in trouble so I could go to the library and read books. Nobody knew anything about autism spectrum disorder, and often told my mom I needed to go to a mental institution for evaluation. I was fine, just neurologically different.

I know there’s frequently this belief that being autistic means you’re not smart. But autistic people often have high intelligence and really are smart people. I’ve always gotten mostly A’s and B’s in school. If I get bored in school I won’t do my work because I feel like I can’t learn anything. I remember most things, including conversations I had years ago. I was accepted into an advanced program for middle school and received an award from the President in fifth grade along with four other people. I skipped eighth grade. I can read most books in eight hours. I can remember lyrics to a song after listening to it twice. I soak up everything like a sponge. I have friends and family who understand me. Point being: autistic people aren’t unintelligent people, regardless of what others say.

I know this may not make much sense. I know there’s a lot of information that may be confusing. But I’ve come a long way from the little girl I was.

If you’re in a situation like this, don’t give up. You’ll be OK. If you’re watching someone go through this, they’ll be OK. Doctors aren’t always right in saying a person won’t speak, or be in school, or socialize. You can’t give up. Work with them. Help them. Everything will be OK. Just have hope that it will.

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.              

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Why I'm Not Celebrating Autism Awareness Month

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It is April. It is Autism Awareness Month. Our Twitter feeds, Facebook pages and other social media accounts have no doubt been flooded with rainbows, jigsaws, blue or what ever symbol or color they have chosen to use this year. But mine has not.

I don’t feel the need to don my onesie for the day, or bake a load of cakes or whatever the latest ploy may be because to me it is just a publicity stunt. What will it be next month? To me “stunts” like this do little to raise acceptance of autism but serve more to reinforce the stereotypes.

I am also uncomfortable with the fact that many of these campaigns are run by charities who, let’s face it, want to make money. Many try to pull at your heart strings and make you want to part with your hard earned cash.

It makes me feel really uncomfortable.

Where are the stories that I want to show my son?

Because after all, isn’t that who it is about? Autistic people, like my son. What message do I want to give him?

There will be some who say, “Well, isn’t any publicity good publicity?” In my opinion, no. Not if it reinforces stereotypes.

I would like to see documentaries showing autism success stories, brilliant artists, musicians, dancers, etc., giving an honest account of their journey to get where they are now.

I would like people to see the diversity within the autistic community, not only the “extremes.”

I would like to watch a concert with amazing autistic performers or a play with autistic actors.

I would like to see autistic athletes competing.

I would like to listen to autistic authors speak, like Temple Grandin, or watch TED Talks like Rosie King’s “How autism freed me to be myself” or Steve Silberman’s “The forgotten History of Autism.”

I want acceptance! I don’t want awareness.

So I will continue to try and challenge those stereotypes and raise awareness of the real issues that face autistic families on a day to day basis. I will continue to write about us honestly and in my own quiet way…

But I will continue to keep one eye on Autism Awareness Month. Perhaps I will be pleasantly surprised.

Lead photo: Thinkstock Images

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Choice I Hope People Make When It Comes to My Son With Autism

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Autism is not a choice. Acceptance is.

Take a moment to digest that…

Now imagine you’re at a busy supermarket, and as you approach aisle five you can’t help but notice a woman and her child. The child with his hands over his ears screaming and the woman, who appeared to be his mother, pleading with him to stay calm. The boy reaches out of the cart where he is sitting and begins to aggressively swing his hands at his mother. The mother responds by wrapping her arms around him and saying, “It’s going to be OK.” You go on your way to complete your shopping as if the incident in aisle five had never happened.

Finally at the checkout line, you begin to load your food on to the conveyer belt. Suddenly, you hear in the line next to you the familiar cry of the boy from aisle five. You peek over and watch as his mother tries to keep him from climbing out of the cart, dodging his hands from hitting her, all while she pays the cashier. Again you mind your business, pay for your groceries and make way for the exit. While leaving the supermarket, the woman and child were stopped at the exit by another shopper. As you pass, you hear the shopper say to the mother, “You shouldn’t let him do that to you.” The mother smiled and responded, “My son is autistic, have a nice day.”

OK, so we’ve all seen a child throw a public tantrum. Have you ever rolled your eyes or stared out of judgement of that parent? Saw a child acting out and said under your breath, “If I was that child’s parent…” Or my personal favorite, have you ever approached the parent and told them how to raise their child? If you answered “no” to the above questions, congratulations, I believe you’ve found acceptance. Be proud of it and hold on to acceptance; it exists but sometimes can be rare to see.

The reality is, the boy from aisle five is my son and I am his mother helping him through a meltdown. “Oh, a meltdown — that’s the same as a tantrum.” False. A tantrum, usually associated with young children, can be when the child acts out to overwhelm the parent and in return gains control or gets their way in the situation. A meltdown can happen at any age, the child or adult becomes overwhelmed and loses control of their behavior and sometimes there is no gain. The next time you see a parent struggle with their child at a supermarket, autistic or not, meltdown or tantrum, think before you act. Instead of staring, why not ask the parent if they need any help. My skin is not as thick as the world seems to think it is. Sometimes your stares and whispers don’t bounce right off me, sometimes they pierce my heart.

My child has autism, and he can’t always control his behavior. He did not choose this, but some people without autism choose to not find acceptance. Imagine if the opposite were true. Here’s my slice of awareness pie for Autism Awareness Month, take it or leave it — if you haven’t found acceptance, find it, because it’s a beautiful thing.

boy walking through crowd wearing superhero cape
Kathleen’s son.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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That Time I Blogged for 26 Days From A-Z for Autism Awareness Month

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son standing in fountain In honor of Autism Awareness month in April of last year I started a project to raise my own awareness on my small little corner of Facebook by lettering each day A-Z and sharing a little bit what autism is and what autism isn’t.

I have two beautiful boys both on the spectrum. They couldn’t be any more different, and while each have their unique challenges, they also each have their unique strengths.

Initially, without telling too much, I shared how things might look a little behind closed doors along with a personal photo to my friends who might not otherwise get that glimpse. But as the days in April passed and I became more comfortable with the safety of Facebook, a change took place with my friends on my page. Instead of the usual 20 or so likes I would get per post, I started getting hundreds. I also started to understand that perhaps the wrong kind of awareness exists. Friends and colleagues began to approach me to let me know just that, and thanked me for my efforts. Acquaintances stopped me to ask questions. I had others quietly ask me for advice since they weren’t “out” yet with their concerns about their child. Others even reached out to offer help in some way.

Somewhere around “K” in the A-Z tale, my husband, who is a wildly private person, changed as well. He too was being stopped by supportive members our community. He had a change of heart. For the first time, he let me know that he was proud of us as a family and that he believed I was changing for the better through the process of writing. I had not changed. I finally felt I had permission to be open. The more he saw he could trust that I would still protect some of the more personal aspects of our life while still being honest, the more open and honest I could become. The process was cathartic for both of us. 

I asked my 12-year-old to read and approve every post or blog pertaining to him. My slow-to-warm, seemingly uninvested Aspie now looks forward to reading my writing and even asked to attend a large and lengthy public speaking engagement where I will be presenting.

Though I started with something on April 1… 26 days later I ended with something else.

April is Autism Awareness Month. In our world where every day is Autism Awareness Month. I erroneously thought “we don’t need any more awareness… unless you have not interacted with the world at all in the last 10 years, everyone has heard of autism… everyone knows someone with autism… enough already with the awareness…”

But I’ve found, most people who don’t really know someone with autism don’t understand it, even though they thought they did, and they certainly don’t hop on autism awareness blogs to understand more. I don’t fault them for that. I would not either. I am a mother of two beautiful boys. Though their autism defines them about as much as their big brown eyes, this projection that we are just like every other family makes everyone around us more comfortable but ultimately becomes the elephant in the room. Not just for those who want to ask questions around my silent insistence things are “just the way they are” but by letting my kids think they are just like everyone else… when they are well aware they are not, leaving them wondering why their feelings are incongruent with the reality we try to portray.

So this year I once again started one more blog A-Z. It’s not everyone’s journey in autism, but it is ours, and it has been healing for all of us to say it out loud.

Follow this journey on Running Through Water.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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